Living a long and happy life in spite of having ALS/Lou Gehrig's disease

Author: incurablyhappylife

What do you do when your inspiration dies? Stephen Hawking died. He was an inspiration to everyone living with ALS /MND. Diagnosed in 1963, I believe he was known to have lived the longest with the disease. When diagnosed, he was given just three years to live. He surpassed that, and just kept going. When you are given news that your life is about to end, someone who defies the odds becomes your inspiration to keep going, just like they did. If he can survive, then so can I, I always thought. And really, I guess that hasn’t changed. He did live with ALS for 55 years, and I am only up to 20 years, so far.

I suppose you just have to trust that the Universe /God has your back. Just last night, I remember waking up in the middle of the night, having heard an odd noise. I don’t remember exactly what it was, but I remember thinking it almost sounded like a person saying something. My husband was still asleep, and no one else was there. I definitely didn’t dream it, and it was loud enough to wake me up. Then, this morning after I had gotten up, and was in the bathroom washing my face (well, having my face washed), I was thinking about what the noise could have been. I wondered if somehow it was a noise from the face mask I wear for my bi-pap machine? It has air constantly being pushed through it for me to breathe, and can sometimes make noises when air breaks through the seal on the nasal mask. But, not sounds like a person making a noise. Then, I wondered if it was just someone watching out for me, I don’t know, God, a Spirit guide, guardian angel, etc… I wondered if I had quit breathing and someone thought they would wake me up so that I would take a breath. That happens every night, I mean, me not breathing, which is why I use the bi-pap machine. It forces air into my lungs to keep me breathing while I am sleeping. Since I was washing my face, I had my eyes closed as I thought about this, and just as I had that thought about someone waking me up, I heard a noise that sounded like something fell from the ceiling in the corner of my bathroom. I looked and didn’t see anything. Coincidence? Or was someone saying, yea, that’s what happened!

Over the years, people have commented and wondered why Stephen Hawking never used his status as a well-known scientist living with Motor Neuron Disease (ALS) to help raise awareness of the disease, and perhaps help to find a cure. Call me crazy, but I truly believe that at least part of the reason Stephen Hawking lived for so long, was because he chose not to focus on his MND. He was in college and just beginning to make some wonderful discoveries about science and the way the world works, when he was diagnosed. He ignored his disease as much as possible, and went on to live his life to the fullest. If he had focused all his attention on his disease, he may not have had the focus necessary to make the scientific discoveries that he made. I think a disease, any disease, can quite easily become the focus of your life, and take over your life. He certainly is proof that nothing, not even ALS /MND can stop you from living a wonderful life. Even from the great beyond, he will always remain an inspiration to many.

“It’s A Wonderful Life” has always been one of my favorite movies. I have no idea how many times I’ve seen it. I watch it at least once a year. I had the words printed into a decal and put on the wall above my fireplace, “It’s a Wonderful Life” (click to see). It’s just a little bit crooked. The reason it is crooked, is because my daughter put it on the wall for me when she was only twelve years old. The fact that it’s crooked reminds me that it’s a wonderful life, not a perfect life. Much like the chips in the dry wall around the door frames in my house. Those chips and marks are from wheelchairs and patient lifts. They are reminders of the bumps in life. The stains on the now old carpeting are from pets we have loved, and children growing up. They all remind me that my house is not just a house, but a home. Every stain, every mark, has a story behind it. I’m not opposed to getting some new carpeting one of these days, but I don’t think I would want to live in a house where everything was perfect. A friend of mine used to tell me every time she came over, that my house had such a homey feel to it. I took that as a compliment.

I remember that a friend of mine told me about a client of hers, who took her on a tour of her big new fabulous house. She had a big staircase put in, with old-looking wooden stairs. She kept apologizing and complaining when some of the steps creaked and made noise as they stepped on them. They apparently were supposed to look old and used, but not sound old and used. I can’t imagine having that as a problem in my life. I mean, if you are worried about that, your life is pretty good, right? Or, maybe she just worried about everything, I don’t know. I am thinking she might have more problems than squeaky stairs.

Life is all about learning. If you led a perfect life, I don’t think you would learn very much. I think we learn more from the hardships in our lives. But. I have realized that just because we have problems, doesn’t mean we can’t enjoy our lives in the midst of those problems. If you wait until your problems are solved to be happy, you might as well give up now. I don’t know of anyone with no problems. I know of people who seem to have no problems, but they are just trying to make their lives look better than they really are. If something looks to good to be true, it probably is too good to be true. I generally don’t let things worry me too much, or not for too long anyway. If something breaks, I just get it fixed. If I can’t get it fixed, I buy a new one. If that won’t work, oh well, I’ll figure it out eventually. I’m not going to worry about it. When something goes wrong, or not the way you hoped it would, just remember that you can’t know what you do want, until you know what you don’t want. So, be grateful that you have been shown exactly what you don’t want, so that you can now make the changes needed to move onto what you do want.

Try to focus on all the wonderfulness of your life. Ignore the bad stuff and the problems as much as humanly (and safely) possible. Search out the good in every situation. And, believe me, there’s something good in everything. If I can say that, when I have been living with delightful ALS for 22 years, then I think anyone can.

This may sound crazy, but I have always loved to look at old tombstones, and see what they have written on them. I also love the design of the old ones, there is so much detail to them. Not like the new ones they have today which all seem to look-alike. I think I found my love of tombstones through an art project in elementary school, when we made a relief of the design and words off of tombstones (our school happened to be right by the cemetery). Years later, while visiting England with my mother, we toured through some old churches and I saw the most beautiful headstones, some with full stories describing the person’s life etched into the stones.

I have often wondered what the perfect words would be to have etched on my stone. How do you sum up a lifetime in just a few words? I think I will simply say, “It Was A Wonderful Life. “

You’ve heard the saying, “You are what you eat”. Well, while too many jelly donuts may make your tummy resemble Santa’s, shaking like a bowl full of the stuff, besides watching what food you put in your mouth, you also need to watch what thoughts you are putting into your mind. Negative thoughts can affect your body in a negative way, just as much as the food you eat. I believe this could explain why so many patients who receive a devastating terminal or serious health diagnosis seem to, many times, immediately get significantly worse. Being told that you have cancer and need a horrible treatment, or that you have a terminal disease, and only have a few years left, is a bit unsettling, to say the least. When negative thoughts fill our minds, they can become all that we focus on. If those negative thoughts are health related, they can take over, and become our main focus. Add to that, the stress and thought patterns necessary to get through everyday life filled with treatments, doctors, and worsening health, and it’s a wonder anyone gets better at all. I believe if doctors could change the way they present the news of an incurable or serious illness to their patients, the recovery and survival rates would skyrocket. Just letting people know that besides medicine, there are other areas of their lives that can hold the answers to improvement in their health, even something as simple as the thoughts they think, would make a huge difference in a person’s life. In the placebo effect, patients who think they are receiving medication get better when they only received a placebo and no medicine, because they thought they would get better. This proves the power that our thoughts hold.

Author and queen of affirmations, Louise Hay, said that disease can be reversed by changing your mental patterns. By eliminating those negative thoughts that automatically play in your head over and over, and replacing them with positive affirmations, you can reverse the patterns that created the disease. More and more books are being written with similar beliefs. Philosopher and author, Wayne Dyer, said that when you change the way you look at things, the things you look at change. Or, if you change your thoughts, you change your life. That is true for every aspect of your life, not only your health.

I believe that I live in a world filled with mostly good people who are helpful and kind, with a few bad ones mixed in, who I almost never run across. That is exactly what I find to be true. I run into kind, helpful people where ever I go. Does this happen because I believe it is so?

Maybe a little denial isn’t such a bad thing either. I constantly read blog headlines and personal comments from ALS patients regarding their diagnosis as a death sentence. While that may be the story they have heard from their doctor, why let that be your only focus? I believe if you live with the belief of no hope, and no cure, then that’s what you’ll get. I truly believe that a big part of why I have survived way past the prognosis of a 2-5 year life span, was because I simply refused to believe that was going to happen to me. Some might say I live in denial, because I believe that no illness is a death sentence, and no situation is hopeless! As Dr. Phil would say, “How’s that workin’ out for ya?” My answer is, “Great!”

The Law of Attraction, says that whatever you focus on is what you attract to your life. When you constantly talk about your health problems, you only attract continued health problems. If you constantly talk, or think, about how you have no money, and how you hate that you have no money, and you have too many bills, etc.. You will continue to attract no money, because that is all you are focused on. And on, on it goes, no matter what the topic. So if you want more money, or a job that you love, try not to think about what you don’t have, and think about what you do want. Focus on how you would feel if you had lots of money, or the job of your dreams, or how you would feel if you could walk again, or whatever it is that you desire. Focus on the good stuff and ignore the unwanted bits of your life, as much as safely possible. Day dream about what you want to happen in your life, and soon, your life will catch up with your dreams.

One fateful evening, many years ago, my grandmother went out on a blind date with a man who would be my grandfather. They were together for many, many years after that night. Married for 60+ years. It’s a long story, but my parents got together as result of blind date (not theirs) also. Similarly, I was fixed up on a blind date by a friend, with a guy who had just returned home after being in the army. That was going on 33 years ago, and we have been apart little since that fateful night. True love.

When you think of Valentine’s Day, and true love, flowers and candy probably come to mind. Maybe a night out with your significant other. But, I think of someone who does literally anything and everything I need help with, and buys me flowers to boot! You know it’s true love, when you are diagnosed with not just a serious disease, but one known as one of the worst you can have with no cure, and your spouse (or significant other) stays by your side to help you through it. Not just sticking with me, but also going along in my quest for better health. Never letting me give up on getting better, and taking me wherever that journey leads us (which has been all over the U.S. ), both when he believes in that particular part of the quest, and even when he does not. Helping me eat dinner since I can’t lift my arms to feed myself. Getting up at 3 a.m. to get me a drink and a pain pill, because I can’t get up myself. Helping me with all personal care, including bathing, going to the restroom, and getting dressed. Doing the laundry, walking the dog, making dinner, or buying whatever I want for dinner, and on, and on it goes. He helps the kids with car maintenance, and home repairs. Did I forget to mention how he seems to be able to fix anything, which saved us a ton of money over the years? That has nothing to do with love, but just shows that the Universe gave me a bonus on top of the true love it sent me!

True love, is my husband staying up all night (when he had already only had a nap in the previous 24 hours) to work on getting the gas fireplace fixed, and making sure I could sleep and keep warm when both the fireplace and the furnace quit working on a frigid winter’s night.

We no longer have a Starbucks anywhere near where we live, so it is always a treat to get a coffee or frappuccino. Whenever my husband has to go pick up something anywhere near a Starbucks, I end up getting a coffee. Even when he is going to a doctor’s appointment, I get a coffee. True love.

True love. I remember when our youngest daughter was sick, and about to toss her cookies right onto our new couch. Without a second thought, my husband put his hands out to catch those “cookies”, and save our new couch! True love, or was it just the fact that hands wash easier than the couch upholstery? I don’t know, but I don’t think I would have done it!

True love. When you are six months pregnant, and you haven’t been able to “go” for a very long time, and the doctor suggests an enema, helping you get that done is definitely true love.

It’s a little thing, but I almost always get to decide what we watch on TV. I usually do try to pick shows that I know my husband will like. When we make big purchases, like cars, houses, and maybe furniture, we usually do that together. But, when it comes to the smaller things, like decorating the house, it’s all me. Anything I want, I just buy it. It’s not unheard of for my husband to come home and find that a room has been painted a different color, or we have new curtains in the living room. He just lets me do whatever I want. Which has gotten trickier over the years, after I lost the ability to “do” things on my own.

Now, before you all get too worked up, I will remind you that I didn’t say that my knight in shining armour did all of this happily all of the time. Especially if it is 3 o’clock in the morning, and I’ve already woken him up three other times. He will not be happy. But, he gets up and does it anyway. Also, when he says he will be there in, “a minute”, I can count on waiting anywhere from an actual minute, to five or ten minutes. And, “stuff” happens, when you aren’t doing things for yourself. Like when someone else is scratching your leg, and they accidentally take a bit of skin off whilst relieving the itch. Or, they can’t tell how far they are pushing the toothbrush into your mouth, and gag you shoving it down your throat! Or, when they try to remove the hair out of your eye, but also rip ten other strands of hair out of your head. Then there are the bumps and bruises, because when you are just one person helping someone who can’t move at all, it’s hard to keep fingers and toes from getting mashed or bent in a way they don’t bend. And on, and on it goes, as you can imagine. But, so far, only one broken finger. Probably not a bad record for over 20 years of care. Maybe that’s the real reason babies cry so much? We all might just not do as well as we think we do taking care of another person, so we are the reason they are screaming when we take care of them? Hmmm, could be… but, I digress.

True love is not just about romantic love. True love can also be love between a parent and their child. Pure love. If you have ever had a pet, you have felt true love. True love is not made up of chocolate and flowers, it’s made of tougher stuff. It’s made up of nights without sleep, and all the things you would never do for anyone else, but you would for your “true love”.

I think The Beatles were spot on when they sang, “All You Need Is Love”. Life may not be a bed of roses, but you can do anything and get through anything if you have any form of true love in your life.

I think I have mentioned before, that I went to see a psychic not long after I was diagnosed with ALS. I hadn’t planned to, it was just a spur of the moment thing. In my visit with the psychic, she told me she thought maybe I’d go back to school, because she saw me with lots of books. Well, she definitely got the book part right, the school part, no thanks! Not long after my diagnosis, I started searching for answers. I wasn’t sure what I was looking for, but the doctors didn’t seem to have any answers, so I started searching for myself. So, I started reading, and reading, and reading. Everything from novels, to inspirational biographies, to books filled with spiritual wisdom, and everything in between. Although I have definitely slowed down the pace, I’m still not done. The more I read, the more I find that I want to read. It all started with a little book called, Heal Thyself, by White Eagle. That book led to more books by the same author, which led to books by and about Sir Arthur Conan Doyle… but, that’s a whole other blog post!

I also discovered Oprah! She had just started doing weekly shows with guests that were somehow inspiring. She was a wealth of inspiration and information. With nearly every guest came another list of books I wanted to read, and many of those guests had websites, where I found more inspiration. Now that Oprah has her OWN network, I find inspiration through many of her programs, but especially on Super Soul Sunday, and Master Class. Of course there is an unlimited amount of inspiration on the internet. Through people like Jason Becker, an amazing musician who is living with ALS, and is still creating music. Or, my friend Sarah Ezekiel, an artist who creates all her pieces with a computer eyegaze program, because she is living with ALS. Or, my friend Father Sophronios from Greece. He is a Monk who is living through faith and inspires others with his writings about his experiences in living with ALS.

Inspiration is all around us. Inspiration to survive any hardship, to lose weight, to go through a divorce, to survive losing a loved one, to live a better life. There is inspiration for absolutely any situation you are going through. Find what inspires you and gives you hope. Once you find it, share it with others. Be the light for someone else’s path, and you will find the light on your own path is even brighter.

Words are powerful. We have to make sure we give power to the right words in our life. If you know anything about the Harry Potter book and movie series, you may know that there is a wizard who other witches and wizards are so fearful of, that they won’t even speak his name. Harry Potter is often scolded by his teachers for daring to utter the name, Voldemort. They fear the power held by the name when spoken aloud. Harry is always quick to point out that he isn’t afraid to say his name. Harry believes that by not saying the name Voldemort, they are giving Voldemort even more power.

I think Harry was spot on. Too many times have I felt the fear cast by the words, Amyotrophic Lateral Sclerosis (say that fast, ten times), or ALS. It is referred to as one of the worst diagnoses you can receive. One of the worst diseases you can have. Hearing ALS referred to in this way, over and over again gives the name a power over you that it should not have.

I, like Harry Potter, think that people give way too much power to the name of a disease. Think of Cancer, for instance. When you find out that someone you know has been diagnosed with it, upon hearing the word, Cancer, don’t you immediately get a sick feeling in your heart, or maybe the pit of your stomach? That is the power and the fear held by the word, Cancer. Power that would be much better off placed elsewhere. Power and energy you could be using to get over, or through, your illness. Don’t give your illness or disease any more power than it deserves. Don’t be afraid of the name and all that the name entails. You will be ahead to actually forget about whatever it is that you’re dealing with (as much as safety possible) , and just go on with your life as normally as you possibly can.

Any negative word can hold a type of power over us. These words can make us feel doomed, like we have no chance of success. If you believe you will fail at something before you even attempt it, chances are you will fail. But, if negative words can hold power, so can positive words. If you believe that you will achieve your goal, just believing it will go a long way in making it happen. Pay attention to the words and the stories that are running through your mind, often non-stop. Are they positive messages of health and happiness, or are you constantly worried about test results and thinking of the aches and pains you have? Maybe not just the stories in your mind, but the stories and the words you use to tell others about your life. When someone asks how you are, what is your first response? Do you tell them about how bad you feel, or about whatever bad thing just happened to you? Or, do you talk about the good things that recently happened in your life?

Is your glass half empty, or half full? Some days it may be hard enough just to find your glass, I know, been there, done that. But, try not spend too much time focusing on the negative. Try to give more power to the positives in your life. It really can make a huge difference. Make every story floating through your mind, one that you would be willing to put in your yearly Christmas newsletter. You know, those often funny and maybe annoying letters people like to add into their Christmas cards to let you know how great their lives and their families lives are going. You rarely read anything negative in those letters. Somehow the people in those letters never have anything bad happen in an entire year! So, go for it! Focus on the positive, and just skip over anything bad that happened. Give power to the positive words and stories of your life! Try to make every day a Christmas newsletter day!

Half of a stick of gum is all you need. When I was a kid, whenever I visited my grandparents, to keep us occupied during church, my grandmother would give my sister and I a piece of gum. But, only one half of a stick of gum. Even for a kid, that’s not much. That’s plenty, she would say.

I have found that there are a lot of things, like that half stick of gum, that I was used to having which, I have realized I can get by without. I found out, with ALS, that it’s amazing how much muscle you can lose, and still live a somewhat normal life. I was walking around, doing everything I always did for years with a great deal of muscle loss. I got by with much less than I thought I needed.

I had one of the original big bulky bag cell phones, back in the day. I had it mainly to use in case there were an emergency, like if my car quit, because I drove 40 minutes to and and from work everyday. So, after I had to quit working due to my health issues, I just never got another phone. I went for years without having or using one. Which means I had also never texted, other than from a computer. And, I lived to tell the story! I found I could survive without one. I finally got a new cell phone last year, after 15+ years without one.

I could never have imagined sitting in one spot and not moving for an hour or even two hours before ALS. Sure, we all say, “I wish I could just sit and do nothing!” What we really mean is we wish we didn’t have to go to work, or do any of our daily chores, but moving about would still be an option. What about when moving isn’t an option? I’ve found it really is possible to sit and literally not move, without going totally crazy. Even a couple of years ago, I was used to asking one of my daughters help move my leg or arm after an hour of not moving. But, when that was no longer an option, I found I could survive moving less often than I had thought.

I used to always be on the go. Now, leaving the house numerous times every day is just a distant memory. I could never have imagined staying in for days, let alone weeks at a time without leaving the house. Now that seems totally normal, and rarely bothers me at all. It helps that most of those periods of time occur during the winter, when just the thought of the cold Indiana weather is enough to make my body ache, and all I want to do is stay in and stay warm. I have experienced cabin fever first hand, but I’ve also learned that you really don’t need to leave the house everyday, every week, or even every month to be content.

We all find ourselves thinking about the things we think we need. The latest model TV, or newly released IPhone or IPad. Whatever it is, it may be something we want, but usually we can definitely do just fine without it. I’m glad I learned early on, that you don’t always need as much of something as you think you do to be happy. Sometimes half a stick of gum really is plenty.

Happy New Year! I am excited for the New Year, and all of the surprises it holds in store for me. Anything can happen! I know that could frighten some people, knowing that anything can happen. But, I prefer to be excited to know that anything is possible. Even the seemingly bad stuff, leads to more great stuff. Because nothing happens “to” us, it happens “for” us. At least that’s the way it works in my world, I don’t know about yours.

At this time of year, I normally get a little down, and cabin fever begins to set in as the cold days pass and I have been stuck inside the house unable to get out in the cold weather. But, this year I have switched things up, and made the decision to spend my days sitting in my chaise in the family room full of windows instead of the computer room /office with only one window. Wow, what a difference that makes. Well, that and the fact that it is so cold out, I really want to stay inside! This year, we have decided to skip part of this year’s cold winter, and spend part of it in Florida and Georgia. So, I am very excited about that! That should take care of any cabin fever issues!

You never know what the year will have in store. This time last year, I would have never guessed that we would have been able to purchase an RV, but we did, and that will make it possible for this year’s trip to Florida. I also wouldn’t have guessed that I would spend 4 weeks of the year traveling through the US, and Canada, but we did. The year is full of possibilities. Like the song says, Anything can happen, if you let it. Last year, I wouldn’t have thought about spending my days sitting around in my pj’s. But, driving in our RV for days at a time, I skipped getting dressed a few times, when I knew I wouldn’t be leaving the RV. I just threw a sweater over my pj’s. And this winter, as I looked at my clothes, knowing that I would not be going out anywhere in this super cold weather, I suddenly wondered why I was getting dressed at all? I mean, I wasn’t going to see anyone (except family), and I wasn’t even moving out of my chaise. So, why not be comfortable and warm? Thankfully I have enough fleece pajamas to spend days at a time in comfortable pj’s. Don’t worry, I have not gone over to the dark side. I am not about to show up at Walmart this summer in my pajama pants, even though that seems to be acceptable these days! But, if you show up at my house unannounced, you will find me in pajamas.

So, be excited about the New Year, and all that it holds for you! You may just find yourself riding around in an RV, in your pajamas.

Believe. A popular sentiment this time of year. I do, Believe. I believe in the magic of the Christmas 🎄 season. I believe all year long. I know that the world is a much more magical place than we give it credit for being. The magic of The Universe is always there, if you just believe.

There is a book called Fairy Faith In Celtic Countries, that talks about the belief in magical creatures like Fairies and Elves, in Celtic countries. The stories were gathered by the author who went around the country side at the end of the 19th century, talking to older citizens of small towns. He heard stories of things, magical things that happened to these people, or to their parents or grandparents. Back when people believed in the magic of the world. I read it years ago. It’s a wonderful book, if you want some proof that magical things just might be real.

I know a person who Believes so strongly, that miracles happen in his life on a daily basis! Big miracles. Miracles, like someone showing up and offering their services to care for him, a person who has ALS, when he had no idea where he was going to find the help he needed. Then, another person came into his life, to care for him. Oh, and I might mention that his body is healing itself. I don’t mean the scrape on his knee is healing itself , I mean he can hold his head up after years of not being able to do that due to ALS. He can take a breath on his own after years on a ventilator! Really huge miracles! Miracles are happening so bigly (that’s a word now, right?) in his life, he is writing a book about it. I can’t wait to read it!

Miracles are right there just waiting for you to believe in them, so they can appear before your eyes. There’s even a book written called, A Course in Miracles. It’s what I would call, a very “woo – woo”, deep sort of book. Maybe not for the beginner who is not so sure about miracles. On the other hand, Pam Grout ( who, if you read my blog, you know I love , love) wrote a series of books called E-Squared, E-Cubed, and Thank and Grow Rich, all about the miracles that are just waiting for you. All with easy to do experiments that allow the Universe to prove to you that it’s there and just waiting for you to Believe.

If you have seen the movie, City Slickers, you might remember how Curly talked about the secret of the Universe being just one thing. Well, I think that secret is simply to Believe. To believe that absolutely anything is not only possible, but probable. Believe in , Matthew 21:22 – “And all things, whatsoever ye shall ask in prayer, believing, ye shall receive”. I think it is the ancient secret of Alchemists, and how the Egyptians built the pyramids, and how everything that seems impossible is somehow possible. Okay, I’m guessing the Egyptians had a few other tools other just belief, but you get what I mean, right? Somewhere along the road between the time when Egyptians built the pyramids, and Alchemists were walking the streets of every town, we lost that magic. But, every Christmas season we are reminded that magic and miracles exist. We are reminded that miracles happen on a daily basis. I am reminded that every day that I wake up is a miracle for me, because many doctors (not mine), believe that people don’t live for years and years with ALS. Much of the time, that is true. But, I believed it didn’t have to be true, and Believing is a big part of making it so.

My wish, is that everyone who reads this, will try to hold onto some of that Christmas spirit, the magic of Christmas, and let it extend past Christmas time and into the New Year. Greet each new day with the same excitement, hope, and Belief, that you feel during this time of year, all year through!